Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Kaiser Permanente Research Bank available to researchers

Discussion in 'Other Health News and Research' started by Webdog, Oct 25, 2016.

  1. Webdog

    Webdog Senior Member

    I wanted to raise awareness that Kaiser Permanente has a DNA bank from patient blood and saliva available to researchers. I'm a participant.

    Apparently, any researcher can apply for the data.

    From their website - http://kp.org/researchbank
    I'd love to see my DNA used to help find a test, treatment or cure for ME/CFS.

    PS: I was a Kaiser Permanente patient for 17 years before I finally got diagnosed with ME/CFS. I had to personally walk into my Kaiser doctor's office with a copy of the Institute of Medicine Report before he would believe this disease and my symptoms were real and not psychological. After diagnosis, Kaiser offered no treatment. After diagnosis, I was told by some Kaiser doctors that I'm a fraud and that my neuro symptoms aren't real.
     
    actup, Mary and *GG* like this.
  2. IreneF

    IreneF Senior Member

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    San Francisco
    Wonderful. Kaiser is one of the few options we have now for medical insurance. Which Kaiser? I'm in SF.
     
  3. *GG*

    *GG* Senior Member

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    Concord, NH
    Is your Dr named Kaiser? Do you mean Kaiser Ins. Co. Denied you Treatment? Not sure why you would expect an Insurance company to offer you Treatment advice or protocol?

    GG
     
    Last edited: Oct 26, 2016
  4. Webdog

    Webdog Senior Member

    It's very common here for people to refer to Kaiser Permanente simply as "Kaiser". I apologize for lack of clarity.

    I think it's reasonable to expect my Kaiser Permanente doctors to offer some kind of ME/CFS/SEID treatment, even if only for symptoms. Is this an unreasonable expectation?
     
    Last edited: Oct 26, 2016
  5. Webdog

    Webdog Senior Member

    According to the website, "The KP Research Bank invites all adult KP members to participate."

    http://kp.org/researchbank
     
  6. *GG*

    *GG* Senior Member

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    Concord, NH
    Yeah, your Drs should treat your symptoms at least. Meds for sleep, your thyroid perhaps etc..

    GG
     
  7. Mary

    Mary Senior Member

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    Southern California
    Kaiser is an HMO. All I've ever received from an HMO doctor is blood pressure and cholesterol checked, the very basics, drive-through medicine. Actually I did have one doctor several years ago who was with Scan who was willing to work with me - he was young and intelligent but unfortunately I moved. On the whole I've found HMOs to be useless. I have straight Medicare, no supplemental or Medicare advantage plan, and am able to see most doctors with this. It would be nice to have the supplemental plan (not an HMO) but it's not worth it for me - there's so little doctors can do and so I don't see them very often.

    However, I am very glad Kaiser is willing to make its dna database available to researchers.
     
    Webdog likes this.
  8. Webdog

    Webdog Senior Member

    Pretty much all I was prescribed for 10 years was exercise and various stimulants. This significantly worsened my symptoms.

    I was prescribed Lunesta then Ambien for sleep, but reacted badly to both and had to discontinue. According to my sleep test, I do not have sleep apnea, so am not eligible for CPAP. I have no pain to treat. Thyroid tests are normal.

    My primary care doctor has no clue about treating ME/CFS, but I keep him because he is one of the few that recognizes ME/CFS is a physical disease. This is really the best I can hope for at this HMO. Most doctors I have encountered at Kaiser Permanente believe ME/CFS to be a primarily psychological disorder. The only ME/CFS literate doctor I have encountered is my liver specialist!

    I would like to see something positive for ME/CFS come out of Kaiser Permanente for a change. Would be great to see researchers use their data.
     
    Last edited: Oct 26, 2016
    actup likes this.
  9. *GG*

    *GG* Senior Member

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    Concord, NH
    How about Remeron or Trazadone etc for sleep? Bad reactions to those meds?

    GG
     
  10. Webdog

    Webdog Senior Member

    Had a very bad reaction to Remeron about 20 years ago. Trazadone has never given quality sleep for more than 4 or 5 hours, and the benefit gradually wears off after a few months. It's been 15 years since I've taken Trazadone or Serzone.

    My sleep is much better recently. My chronic sinusitis cleared up soon after starting Valtrex and low dose naltrexone (prescribed by a non-Kaiser doctor) and now I breathe much better. Sleep is no longer a major health issue for me.
     
    *GG* likes this.

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